I'm still playing catch-up from my first family vacation in who-knows-when, and basically, a week long mother's day extravanganzaa.
Whoa, am I spoiled by the two men, big and little, in my life. I'm one lucky momma.
Today, I'm posing some writings from over the weekend to catch you all up on the life and times of the Ford family.
Real quick, Thursday's appointment went really well. I will be decreasing my prednisone by 5 mg so now I will now be taking 25 mg daily until my next appointment. I will also need to send Dr. Alyea Dr. Paul matzkin's email, so he can be in the loop.
Everything looks great.
I probably won't need a t lymphocyte infusion since chronic gvhd is essentially the same thing. Lymphocyte infusions are generally reserved for people who do not have the reaction I have.
I guess there is a silver lining in all the suffering of GVHD.
Middle of The Night Waking
FYI- Xander staged this picture on the right. My little photographer made me what, camera in hand, to snap the shot at just the right time. He was right, this picture is awesome. It really catches how happy he was this weekend, and no, my parents were not in the room with us. They had their own. We were all in Portland, ME to celebrate Grace's graduation from University of New England with a degree in NURSING!
It's my midnight waking or middle of the night waking time.
It's rumored MC Escher would take advantage of just such a lull in conscious states, where sleep met wake, to create his art. I hear he would hold a key over an iron pan and just as he was transitioning into slumber the key would fall to wake him. Then he would draw. He would draw beautiful pieces of connecting art no architect could ever build and no artist could emulate no matter how hard the try. This is the type of writer I would like to be: escher style, nonpareil, maybe someday.
Today, I'm doing my new nightly ritual of waking up to write. I think it has something to do with the steroids. I wake up to write and eat. There is no sleep for me on an empty stomach. The same night foraging happened after my first transplant.
Like this time, I had lost a significant amount of weight and strength due tp pneumonia that kicked my ass so badly it to six weeks to recovery. I was brought back to life again with steroids. I would wake up every night and need to eat a bowl of cheerios or not go back to sleep.
Funny thing was, Heather was living with me at the time, and she was pregnant. It was all out sibling rivalry for the food.
It was more important to each one of us to gain weight: me to regain strength and the ground I had lost to not look like a skeletal cancer patient and her to feed and nourish the developing unborn child inside. It was an all out battle of the fittest for survival over the cheerios.
We would go through four boxes a week mostly from late night pillaging when either of us would wake up and get as many bowls into ourselves as we could before the other got to it and we were out.
Loser should have had to go to the store to buy more, but really, the loser just didn't get cheerios that day and jon was sent running to the store to appease the two seriously hungry women he was housing.
I'm not quite that bad right now. At my appointment yesterday, Alyea decreased my prednisone dose to 25mg daily. I'll stay at this dose for the next couple weeks.
Thank goodness. I have gotten moi joi de vivre back.
I had been sick for so long functioning misery was my daily expectancy.
Now, I am rediscovering life. I am falling in love with it again. I am remembering why I am fighting so hard and what exactly I want to live for. I have dreams, big dreams of making the world a better place.
I like people and want the to succeed in life doing good. I want to be here to help and see all the wonderful things that can happen when humanity is put to the test and rises above the challenges to reveal their inner greatness. This is definately worth fighting for.
John Barrymore stated that "a person is not old until they have seen their dreams turn to regrets."
I am not there yet, not even close. I hope I won't ever be. I am alive and I know because I have dreams.